In Their Own Words – One New Message

This “In Their Own Words” is by Laura Traw, who has a son with autism.

Sometimes I have a hard time watching shows regarding autism. No matter how I prepare myself, I find myself either turning off or walking away for awhile, then always coming back. My thought process always seems to be, “I am living this life. It’s too painful to watch someone else go through it as well.”

When HBO aired “Temple Grandin” (great job, by the way), my husband and I (on the west coast) watched the east coast feed while my best friend, who is in Tampa, watched at the same time. Periodically, we would text one another, something like this, “how r u holding up” Me: “so far so good”. Then, there is a point in the movie when the doctors told Temple’s mother that Temple needed to be institutionalized. I don’t remember the exact correspondence between the two but the message was all too clear. There was no cure, no hope.

Another text came through, “are you ok” No, I’m not.

I looked at my husband, tears streaming down my face. I felt like someone was standing on my chest; I couldn’t breathe and I could not stop this waterfall. What was happening to me?

“I can’t watch this,” I said, as I got up and started walking out the room.

He stood up and came over to me. I could barely make his face out, because my eyes were covered with tears. He hugged me, really hugged me – which was good because I felt like I was going to collapse.

I put my head in his chest and sobbed, “I just can’t.” Without hesitation he stopped the DVR, and said “It’s okay.”

It wasn’t “okay” – this is our life!

Maybe I’ll learn or see something that will help, that I can do, I’m thinking. Why was I feeling like this? I have to pull it together, I have to be strong for my son. How can I fight this battle if I can’t sit through a movie or a show about autism?

My phone vibrates, another text, “this is so good, what an amazing movie.”

Amazing? This isn’t amazing – nothing about any of this is amazing. I text back, “had to turn off, can’t watch.”

Does no one understand this? I know this is a great story and I know she has made such strides and is a voice of hope, reason and even understanding to this disorder.

What is wrong with me?

I am strong. I have been strong. I will, and have fought for my little guy and I dare anyone to tell me we can’t or he won’t be able to do something because of autism.

Why can’t I watch this movie?

I leave the room, utterly and completely defenseless of my own thoughts. I start doing laundry, anything to keep me busy. My husband comes in. I keep my head down, because I know I am going to start crying; I am weak.

I can’t be weak.

“I love you,” he says, standing in the doorway. I pour the laundry soap into the washing machine; I still can’t look up. “I love you, too,” I say, my voice quivering.

He sets my phone on the counter and there it is, telling me, “one new message.” I read it – “you are an amazing mom.”

That’s it, just that.

How is it that when I am so weak, my husband is so strong or although miles and miles apart, a best friend still knows just what to say?

I don’t know, but with that and about an hour to pull myself together, I sit on the couch with my husband holding hands. Sometimes I’m clinching.

We laughed, we cried and WE made it through the whole movie. It’s still hard for me to watch some things, but I am so thankful for these amazing people who open themselves and their lives up for the rest of us to see, hear, read and learn from. We are not alone, I am not alone.

It is because of such courageous people, my family, my husband and, yes, my best friend that I, too, have opened up about this journey.

These are raw emotions, me, us, our son. There are some moments when I feel like I just can’t make it one more minute. Then there are moments like the other day when I pointed to the color red and my son said, “RED.” Or last week when we were at the beach and he could not get dirty enough. We didn’t have to spend hours wiping every piece of sand off of him, or wash his hands numerous times to make sure there was no more dirt. A big day for us!

My heart hurts. I get angry and yes, sad. I am strong, but sometimes I feel defeated. I cry alone, because I don’t want anyone to see my tears. But, I open myself up because I know that I have a great family, wonderful friends, a husband that I adore, a son that is the love of my life; and yes, I am an amazing mom!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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I get it. My son, who is 15 now, was diagnosed in 2nd grade. I feel the same way. I’m living this. Why do I want to watch it on tv? (BTW, I also feel the same way about American Choppers :-), not because of the choppers, but because of the explosive anger) I actually haven’t brought myself to see this movie. I really like reading books by Dean Koontz, but stopped reading the Frankenstein series because one of the characters was creating autistic people to experiment on. Totally made me angry. I get it. You are not alone. There is no glory or entertainment with living with autism. There is just every day. And every day is different; some better, some worse. And in the end, we hope that our family keeps together and has happy memories for the most part.

Beautifully written. I know the feeling well. And I can listen to therapists and others teach me about autism and what it is and ways I can help my daughter, but it’s SOOOOO hard to read about it. Or watch TV when something’s on regarding autism. I haven’t seen the Temple Grandin movie yet and I think I would probably cry all the way through it. Just wanted to let you know–you may feel alone sometimes, but you’re not. There are lots of us out there. Sometimes it just feels like you’re the only one… it does for me. (hugs)

I know exactly how you feel, but that movie gave me hope. It inspired me to keep teaching him, keep loving him, keep trusting that he will overcome this. I tried reading the new book about an autistic boy by Jodi Picoult (one of my favorite writers) and I couldn’t get past the first chapter. It was a story of my life and I don’t want to relive it in a book. BUT the movie wasn’t a made-up story, it was real, and showed me that these kids can live somewhat normal lives. Go back and watch it….

This hit home….wow! Every single thing said reminds me of every single time I tried to watch movies like this….to this day it is still hard but i know I learn something from each and every one I watch and it will help Lincoln. My love goes out to you!

Laura, thank you for sharing your story. I am sitting here with tears rolling down my face. I honestly feel the exact way you have. I just can not explain why or when the emotions will take me over. I watch the stories and hope to gain some insight or educational information that will help me help my daughter who has autism. Sometimes it feels like self inflicted torture, but I keep on hoping and hoping for a sign. A sign or a cure. It gives me peace that I am not going out of my mind. I am glad to know there is someone out there that feel the same way. Thank you from the bottom of my heart. God bless you and your family!

i know exactly what you are feeling laura i have 2 autistic children a son with diabetes and recently had a brain tumor and now as a side effect and result of the tumor can no longer work as a nurse so i went back to college to get a degree in special education. i had to make a report, research paper and give a presentation on autism and it was murder. all i did was cry and sulk and it was really hard to do it but we gotta keep on going cause our kids are relying on us and we need to be there to help and guide and show them the way.

I feel your pain. I too had a difficult time watching the movie, but am glad I forced myself to do so. Temple Grandin has several books on the market currently that I would suggest reading if you have the time, and the dedication. They are not an easy read. It is painful to hear details about her story. The point is, they are full of strategies you can try with your son. Her latest is titled simply “The Way I See It”.
My son and I had the priviledge of meeting her at a book signing hosted by Barnes and Noble about a month ago. She is truly a strong woman, and a powerful influence, not only in the autistic world, but in the entire world!
Good luck to your family in their continued battle! You are in my prayers.

Thank you for your story. I cried and cried about the “RED” and getting dirty at the beach!! My son is now 4 1/2 and I have many of those “weak” moments but I’ve come realize that an awesome moment in probably just minutes away and it always gives me hope. A few weeks ago my son saw my slice of pizza, and he said, “PIZZA” the funny thing is, I didn’t think he even knew what it was or even liked it. He ate my whole slice! What a moment!! Aren’t we so lucky that we can find such joy in the little things.

hello laura i read your piece YES YOU ARE AN AMAZING MOM and i too have a son with autism i understand totally where you are coming from every word .autism is very cruel it makes our lives so uncertain we feel alone and scared for our childs future if we are not around .but who knows the future and our children do have different qualities that others do not see as long as we feel they are doing the best they can that,s what we all want to be happy .from one mom to another i send you love and i really do know how you feel comment back if you like x lorraine x

Thank you for a very well written essay. I want to say that it’s very helpful for me to read an essay from a mother of a child with autism, like my son has. Much of what I see and read is written or produced about children who are hardly affected at all and I am left feeling terrible because my son, Sam, really does have autism. He can’t have conversations and he can’t do many things, because of his autism. I too have a wonderful husband, who suffers because this child will never be able to do things because of his autism. We have had to accept this. My husband is upset so much because he can not accept this. My son is 19. We all have to accept ourselves for who we are and we have to accept our children for who they are too. It is the way forward. I can tell you that with acceptance comes unconditional love and joy. We can fight and struggle and refuse to accept for only so long, and then, we have to live. Being a parent is not about making our children into our own image of what we need them to be. It is about learning to love them, helping them grow, learning to grow from what we learn by being their parent. The inner journey will get easier as we let go and learn this. We will all witness miracles in our children’s lives, but they might not be the one’s we think we want. Thank you again for your writing. Sincerely, Vicky Z.

Vicky, you hit the mark when you said “We will all witness miracles in our children’s lives, but they might not be the one’s we think we want.”

In truth, they’ll be bigger, better and more glorious than than we imagined!

And we’ll start witnessing these miracles when we’ve finished mourning the loss of our dreams for their life. All it takes is a simple shift in perspective – from thinking we have to change, fix or force them to be more like us, to recognizing that maybe – just maybe – they’re here to teach us something… That something may well include patience, acceptance, understanding – but I guarantee that’s not all, and I guarantee we parents aren’t the only ones they’re here to teach.

Perspective is Everything.
Everything is Perspective.
We get to decide if we want ourselves and our children to be happy and thrive, or not.
I choose JOY every day of the week!

I still don’t know if my son is autistic although sometimes I think he is. He is only 3 1/2 years old and if it weren’t for pioneers like Temple Grandin, I wouldn’t know about autism or early intervention. I had my son in early intervention when he was about 18months old and so now he talks and he is becoming very expressive but he seems to have some sensory issues with food and can still use help with expression and other issues and so if he is autistic, I am hopeful because he received early intervention and he has improved and if Temple Grandin and many others with autism can achieve goals then so can my son. God Bless you also for sharing your story.

Thank you so much for this story! I work with early intervention and have the opertunity to work with many parents as they get the first diagonis or when they are first realiziing something is different with thier child. I have a real passion for working with children with Autism but not having a child my self who has autism, it is hard to relate and to know what these parents are feeling! So thank you so much for expressing your feelings and being willing to share them with us! You have helped me to understand what not only you but many other mothers feel.

I can completely relate to your story, I believe watching a TV or show or even anyone else makes us see things from an outside perspective and it becomes even more real. It was hard at first but I actually bought this movie last week, it caught my eye at the store. I have been trying to stay strong and think postive and arming myself with research and faith so that I can help my son in any way that I can. I have my pity parties and crying sessions, but I force myself back up and realize that these are my own fears and obstacles I have to face. My son is happy and doing well and that is what I hold on to everyday.

What an amazing story and you are an awesome mom!!! I found myself different then you. I had to buy books, many books, tv shows, movies anything to help me learn more about it and how I could help him. I can’t imagine having a hard time watching anything about it. My husband had the hard time. he denied everything at all our doctors appointments. He kept saying that our son was fine. Its nice to hear everyone’s different and same experience. thanks for sharing and stay strong!!!

Thank you for sharing, I cried right along with you. I am so glad I am not alone, I couldn’t explain to my Mom why I couldn’t watch Parenthood on TV. That is the answer, it is too painful to watch a family go through the early stages again. It is painful to watch daily routines be so challenging because of 1 child (who is not a toddler) throw a fit, and know I have been there, I will be there again. It is too challenging for me to watch family members (Aunts, Uncles, Grandpartents) deny anything is wrong with this child they are related to and to brush off any and all feelings their brother, sister or child are going through having to parent a child with autism. Now that my daughter is getting older (9) things are different. But, the traits and subtraits and my anger are still very prevelent. Some days are hard (I try to be strong) and other days are very fufilling! I wish the latter was more true. I pray for her every night to have as normal of a kids life that she can. (she has been in training since the early age of 15 months) To not be ridiculed or treated differently yet at the same time to realize she has issues and is a wonderful person regardless and fill her with love and support. It is a hard line to draw and a hard line as Mom’s and Dad’s to decide which side you are on and when and why. (being tough, and pushing on or stopping and crying for them) Being strong is hard when inside your heart really doesn’t know what to do. Bottom line, I love her more and more everyday. I can’t imagine my life any different.

Thank you Sharon. I too have an Autistic daughter who just turned 15 on Tuesday. There are so many more challenges to having a daughter as opposed to a son. Menstruation is really challenging, mood swings, she hates taking baths, she’s SUPER strong, but really petite. It takes my husband (who’s a pretty big guy) and myself to get her into the bathtub (sometimes fully clothed). I too have a hard time reading or watching anything to do with Autism, living it is hard enough! Luckily with early intervention we can have very basic communication with our daughter. But ask her to go get her underwear and she’ll just stand there opening every drawer even though they haven’t moved from the drawer in 10yrs. My wonderful friends suggest things when I am having a hard time getting her to cooperate, but they really don’t understand that she WILL NOT comprehend what I am saying. I’ve gone to the school because she would not leave a classroom (laying on the floor),wouldn’t get on/off a bus, was sitting on the floor (with her period) and would not use the restroom. You just pack yourself up and go help your child. Our newest challenge is clothing (sensory issues) she rips every t shirt she wears to bed and it takes at least 20min to find one to sleep in that does not bother her. I do realize I am not alone, and my stories may be unique but familiar. Everyday there is a challenge and a reward. The BIG hug and kiss are the rewards I look forward to everyday. I learned a long time ago not to sweat the (what ifs..)small stuff anymore. She loves music,Nick and Disney channels are her faves. We love that many of their shows are like musicals. I am so grateful to be her mom and enjoy the little things that excite her! We pray for her to have some form of normalcy as well. I can’t imagine my life without her though…as challenging as this journey has been I have learned how strong I am, my marriage is and how brave our little girl is…Ok I’m gonna start crying now. I love that there is a place for us parents to share our thoughts and to realize we are NOT alone EVER. Thanks eveyone!

I love this, yea fine it made me cry, anything like this does but that’s ok :) Is that your son in the sand? If so is he kicking? I’m just wondering because my son likes to lay down and kick for awhile a few times a day and I’ve never met any one else’s child who did. Thanks for sharing your life.

I’m going to have to watch that movie, I love movies that may help or open my eyes to things I may not already be doing for my son. Thanks for sharing your reaction to that movie I hope I learn something new. at least I know I’ll cry which for me crying during a movie is the only way to let these feelings of guilt and frustration out….
On another note… Matthew,7, read his first sentence today without prompts!!! I’m so Happy. those are my reminders that I am to an awesome mom.

Thank you for sharing. I know the feeling of not being able to go on. I have a 4 year old with aspergers. But today for the first time I met another mother with a child that has aspergers. I am 23 and Gabriel is my first child. He is 4 and I can honestly say that I realized today that God gave me him because I am strong. We are all strong women. I don’t have any other children, but to me my son is just a normal child he just likes things his way, and he will certainly let you know if he doesn’t like what is going on. My husband and I don’t do much like going out to dinner, because Gabe is not comfortable with us leaving. He started K4 this year and his teachers know he is autistic, but I am fairly certain that they have no idea what that is really. I am sure they have heard of it but I don’t think that they know quite how sever the struggles of day to day life are. I haven’t seen this movie but from the sound of it I don’t want to watch it. I just want to let you know that you are not alone. Thank you for sharing and please keep up the faith.

I completely understand how you feel. My little boy is five years old and does not talk at all. When I put him on the bus to go to school in the morning I tear up most of the time. I always wondering are they really treating my son good in school , when I am not around. I turn on the news and constantly hear about autistic children been killed by a parent or being neglected inside an institution and losing their lives. I just get so angry and began to cry every time. Us parents know that these children are Angels with special gifts, but some other people in the world are so cruel to them and just want them to disappear. So, we as parents must stay strong and not let any negative things about autism destroy our journey.

When I log on here I know to do it alone and with plenty of tissues. So many people are feeling the same as I do. I love my son to death he is 3 and has been “behind” his whole life, I never wanted to admit that anything was different about him and used the excuse “boys are just slower than girls” Eventually I had no choice we had him monitored and they have given us way to many diagnoses but I truely believe its autism so does a the people who see him everyday. They say he is to friendly and loving. Who said all children with autism are mean or prefer to be alone?! Luke is going through alot as the whole family is but not one day goes by where I dont wonder if this is something I caused by not eating properly durring my pregnancy or taking medications to stop labor most of my pregnancy. Dont get me wrong I love my son and am VERY proud of him for the progress he had made but I still want to make sure I am doing everything I can for him.